After a diagnosis of amyotrophic lateral sclerosis (ALS), a progressive neurodegenerative, muscle-wasting condition that doesn’t have a cure, your focus should be on what you can do to help maintain your quality of life.
Treatment with Relyvrio (sodium phenylbutyrate and taurursodiol) in the CENTAUR trial significantly extended the median survival — by 10.4 months — of amyotrophic lateral sclerosis (ALS) patients compared with an historical patient control group, a post-hoc analysis of study data reported. This finding more than doubles the 4.8…
Yay, it’s October! Fall colors, pumpkin pie, Halloween, and my birthday month. Not only am I feeling “another year older, another year wiser,” I’m also grateful and appreciative that I’ve had 72 birthdays, even though I’m living with ALS. But reaching this particular milestone has me pondering the complicated…
The National Institutes of Health (NIH) has awarded about $45.1 million toward an expanded access program (EAP) of CNM-Au8, an oral therapy candidate for amyotrophic lateral sclerosis (ALS). The EAP, commonly referred to as compassionate use, will make CNM-Au8 available to U.S. patients who aren’t eligible for clinical…
People with amyotrophic lateral sclerosis (ALS) due to mutations in the FUS gene may benefit from interferon-gamma treatment to delay disease onset and/or progression, an early preclinical study suggests. Researchers found that an immune signaling protein called interferon (INF)-gamma protected patient-derived motor neurons from oxidative stress. INF-gamma also restored…
The Barrow Neurological Institute has received $16.7 million from the National Institutes of Health (NIH) to help coordinate a nationwide repository of clinical data of people with amyotrophic lateral sclerosis (ALS). The Access for All in ALS (ALL ALS) Consortium will serve as a repository of biological samples and clinical…
PrimeC, NeuroSense Therapeutics‘ investigational, fixed-dose combination therapy for amyotrophic lateral sclerosis (ALS), significantly boosted the survival of patient-derived motor neurons to levels similar to healthy controls in a lab study. The independent study was led by Justin Ichida, PhD, a professor of stem cell biology and regenerative…
Amyotrophic lateral sclerosis (ALS) patients not eligible to participate in clinical trials of pridopidine — a small molecule developed by Prilenia Therapeutics to slow disease progression in ALS — will soon be able to receive the experimental therapy via an expanded access program (EAP). EAPs, also known…
Cytokinetics is calling for proposals from patient advocacy organizations focused on amyotrophic lateral sclerosis (ALS) and cardiovascular conditions for its 6th annual Communications Grant Program. The 2024 program will award five grants totaling $20,000 each to groups serving the ALS, heart failure, and hypertrophic cardiomyopathy communities. These…
I have a vivid and beautiful memory from a few summers ago, as my late husband, Jeff, and I lived with his ALS. We were spending a day on the water, as we often did. Jeff had lost his voice and most of his ability to walk,…
